Sunday, October 7, 2007

So, I guess it's a good thing when I don't have much to report, right?

Frankie's been doing well (kow*).

He was able to go to school last Thursday for his speech class. It's not an incredibly big deal, seeing as he's in a very small room with just the teacher. But, it's those small steps toward normalcy that are encouraging.

We are starting him (again) using the PECS system. At home, it's difficult to completely integrate right now, so we started off small with one picture on the refrigerator... cheese. And, wow, does he know how to use it! We definitely need to get more pictures of different foods, but I think he'll still just want cheese.

We need to have the doctors write up a very specific note to get Frankie attending school on a more full-time basis. We also need to make sure this is "okay" by the school. If and when that happens, pre-immunization, I truly think it will be a wonderful experience for him. He's getting back his personality and his ability to socialize with children his own age. He's definitely getting better at family gatherings.

Okay, so I was going to write more, but it's now 11:20pm and I want to go to bed.

Please say some prayers for our friend, Kacey. She's leaving (last I knew) tomorrow to have her transplant in Boston. We wish Kacey and her family all of the strength, courage, and love to fight this battle.

Good night, all!

*kow = knocking on wood

Sunday, October 21, 2007

First, please say prayers for a sweet little girl, Caroline... Kate's big sister. She's not doing well and the entire family could always use prayers, positive thoughts, or even a kind word posted on Kate's Caringbridge website (on Frankie's Friend page).

We have been fans of the Kirk family since the first day we met on 5200 at DUMC. Kate's bubbly personality commanded attention by everyone, from other transplant patients all the way up to the doctors. We've never had the pleasure of meeting Caroline, but I'm sure if she's anything like Kate, she brings sunshine wherever she goes.

Second, I'm truly surprised that I haven't gotten a text or email from you, my dear Arizona friend!!! My friend, Brian, has assigned himself as my pleasant reminder to update my site for Frankie. It's been two weeks, exactly, so, Brian... you're slacking! ;)

That being said, we've all been busy in our house. Frankie has had a "normal" cold for over a week now. It takes him longer to overcome these little diversions, but it has definitely not slowed him down one bit! He's so incredibly active and energetic, with only a slight cough and runny nose that continues to linger.

The day after Frankie's cold reared its inconvenient head, I caught it. Thankfully, I just got rid of it a couple of days ago. It didn't really slow me down either, it just made things a little tougher to do and/or handle. Surprisingly, Frank has avoided the cold... and he's the one who goes to work and sees more people during the day than Frankie and I do all week! Go figure!!

So, over the past two weeks, we've taken Frankie to Mystic, Beardsley Zoo, a couple of football games... all of which are outside. We've been enjoying the fall weather up here in CT a lot more so this year than last, that's for sure!

Some exciting news is that for two hours a week, Frankie gets to go to school for his Speech Therapy. He gets to sit in on a classroom with four other children his age. We're still waiting for the school's medical director to approve more visits and/or full enrollment in this program. We've gotten the OK from Yale, which is great.

However, this new "freedom" will definitely come at a cost. After one session, Frankie caught a cold. We can't say for certain that it was from school, because we also were doing a lot more around several more/different people during that same week.

But, to keep him out of a school-type setting any longer would be more detrimental to his social and educational development, that we basically have to bite the bullet and take the good with the bad. So, please wish Frankie luck with going to school and with keeping the "bugs" at bay... especially as RSV season begins!! Yikes.

Thanks for checking up!! :)

Tuesday, October 30, 2007

Today we lost another precious child. Caroline Kirk, Kate's big sister, passed away today. She suffered from the same disease/disorder as Kate, but was unable to receive a transplant.

If you have been following their story, you'll know what amazing people the Kirks are. They are surrounded by wonderful, caring friends and family, which I believe can only be a reflection of them.

Please pray for them during their time of loss. Kate's link is on Frankie's Friend page. If you find the time, please visit.

Frankie is doing fine. He is enjoying the two hours a week he gets to go to school and be among other children his age. While he still doesn't have speech, he's learning every day.

Today I witnessed him figuring out the gates that I keep up between our hallway and the kitchen. Trust me, they're not easy to open. But, he managed to do it with no problem. This is just the beginning...